Page 79 of Love… It's Messy
Huntington’s disease is a rare, inherited disorder that causes nerve cells in parts of the brain to gradually break down and die. The disease attacks areas of the brain that help to control voluntary movement as well as thinking and psychiatric disorders.
Symptoms can develop at any time, but often first appear when people are in their thirties and forties. When symptoms develop early, the disease might progress faster.
There’s no cure, and medication can only help manage symptoms, but can’t prevent the physical, mental, and behavioral decline. The cost for care is staggering, and I now understand how fortunate Mitch said it was that Peyton had good insurance. It makes sense why Luke said he needed his.
The more videos I watch of families and patients telling their stories, the more I’m going to be sick. These wonderful, kind, beautiful families are all devastated by disease ripping through their families. Even the ones who get a negative diagnosis are riddled with survivor’s guilt.
I pray Ainsley’s biggest worry is the guilt. To imagine my girl with her sassy flair for life being trapped in her own body, unable to swallow or even think …
I look up at Luke. He’s freshly showered since he smelled of pea soup and antiseptic. His thick hair is slightly curled from being wet, and his skin is dewy. He must have dressed quickly because the long-sleeved shirt he’s wearing is clinging to his chest, molding the contours of his body.
He’s looking at me with a quirked brow and motioning toward the laptop. “Close the laptop. Nothing good will come of it,” he says.
“How can I not look this up? It’s my daughter’s potential future. I have to get her tested.”
“You can’t. She needs to be at least eighteen unless she shows signs.”
“That’s insane.”
“I know. All of this is a cruel, insane burden. I’m sorry that of all the men to have a kid with, it was me.”
“That’s a loaded statement. If I’d never met you, I wouldn’t have Ainsley. She’s who I was meant to have, and no matter what, I’ll do anything for her.”
“So will I.”
“Then, get tested.”
“Except that.” Luke’s eyes are intensely serious. “That kind of information can have terrible consequences.”
“Same can be said for Lauren. She didn’t find out, and it ate at her.”
With his eyes clenched, he nods in agreement. “I know. Lauren’s tailspin came with Peyton’s diagnosis. It wasn’t just Mom’s. It was knowing that one of us had it. She decided to live her life as if she had the gene. Imagine how much worse it could have been had she tested positive. I’m convinced she would have overdosed on purpose a long time ago.”
“Luke.” It’s all I can say. There isn’t more to add because from what I did see on the internet, suicide is common among the carriers. The thought of the pain and agony they would face with the worst disease known to man or the realization of what they’d put their families through, is enough for some to end their own lives. That must be why it’s called the Devil’s Disease.
I hug Joe and wish for yesterday.
Heck, I wish for the car ride when I didn’t know any of this.
Turns out, ignoranceisbliss.
Reality is misery.
“You don’t want her changing her dreams because she thinks she’ll die young. Ainsley is going to live a good life.”
“You sound awfully optimistic. You sound like your dad.”
“Maybe finding out I’m a father changed my perspective.” Luke pushes the computer over. Joe jumps onto the table and finds Luke’s hand and seeks his affection. Luke picks him up and cradles him in his arms. “Plus, this guy helps relax me.”
“I see how he’s a good emotional support animal.” I say, eliciting a growl from Joe. “Excuse me. An emotional support man. You are not an animal.”
Appeased, Joe leaps from Luke’s arms and lifts his chin to me for a nose kiss.
Luke moves his shoulder in a joking motion, circling it back. The tic catches my attention, and I’m quick on my feet.
“Your shoulder just flinched,” I say quickly.
“Yeah. My back hurts. Slept like shit last night.”